APS diagnosis and later symptoms - Hughes Syndrome -...

Hughes Syndrome - APS Support

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APS diagnosis and later symptoms


Hi, my name is Melissa. I will be 27 this up coming month.

3 years ago I misscarried at 9weeks, I delivered my first born child two years ago. He was born at 31 weeks 7months pregnant he was two months early. I had developed Severe preeclampsia. Along with high blood pressure during my pregnancy. He was 2.9 pounds and 15 1/2 inches long the last 4 weeks in utero he did not grow any as the preeclampsia was attacking me and not nursing him, he spent 45 days in the hospital before coming home. Today's he is a healthy 2 year old. After my complicated pregnancy The specialist decide to test me for antiphospholipid syndrome. Test came back positive. I did not have any symptoms leading up to this diagnosis before the complicated pregnancy and maybe the miscarriage. However no body symptoms.

As of lately I have been feeling tired all the time, leg cramps in both legs and migraine like headaches. I have had a MRI on my brain sto make sure that the APS has not affected anything, everything came back normal. I am not on any prescription, but being followed by rheumatology. She is not concerned that any of my symptoms are related to APS. Id like to believe her however why am I feeling these symptoms. I am making an appointment with my healthcare provider and again with my rheumatologist to evaluate things more thoroughly. I want to feel good and in a since normal again. Am I alone in all this? I am trying to understand APS syndrome and its life style. It's been very confusing so far. Sorry for the long post, just wanted to explain myself clear.

6 Replies

Hello, and welcome, you most certainly need to be monitored by somebody who fully understands the condition, not half understands it, most probably you would have Aspirin suggested to you, and the fatigue is definitely related as are your other symptoms. Where are you located as it will enable us to help you more efficiently. You can also read the charity website attached to this forum which carries great information. hughes-syndrome.org/


1HappyMom in reply to MaryF

Yes I have been suggested to take a baby asprin daily. Which I recently started taking. I have never had a blood clot but definitely getting one worries me. I am located in Northern California.

Hello Melissa and welcome.

I fully agree with what Mary has said.


MaryFAdministrator in reply to 1HappyMom

Hi there, we have lots of members from the USA on here, some will guide you to where they go, in the mean time have a look at the names on here: apsaction.org/ you could ring the nearest one to ask for some guidance. MaryF

Very sorry to hear this. I have had Hughes 6 years and effects every part of my day and life. It doesn seem to get better. More symptoms and lesser quality of life. On Iprivadk 15mg 4 shots per day every day. Not alot known about us and I also have a number of othet problems. Good luck from S.F. CA. Joe

I have had 6 blood clots left leg, 3 blood clots right leg, 1 in my left lung, 1 in my right shoulder and a massive clot in my groin. I am in permanent agony. No doctor says that they can help me and know nothing of APS. JOE

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